Autistic child transformed through help from iPad

Scott Hilyard

Sunday

Mar 27, 2011 at 12:01 AMMar 27, 2011 at 9:46 PM

Tara Oathout couldn't believe it. Her son, Grady Oathout, who will turn 4 in August, was asking for fruit and they had just gotten back to grandma's house after lunch at Avanti's, where he had eaten more than anybody at the table.

"He's always hungry," said Tara Oathout as she walked into the kitchen to fetch him something to eat. "Amazing."

Actually, it was amazing, but not only because he wanted more food so soon after a big lunch. Grady, who has autism, didn't ask his mommy for a banana in the conventional way by activating the anatomical mechanisms that produce human speech. Grady doesn't talk. He asked by using his Apple iPad.

Tara Oathout couldn't believe it. Her son, Grady Oathout, who will turn 4 in August, was asking for fruit and they had just gotten back to grandma's house after lunch at Avanti's, where he had eaten more than anybody at the table.

"He's always hungry," said Tara Oathout as she walked into the kitchen to fetch him something to eat. "Amazing."

Actually, it was amazing, but not only because he wanted more food so soon after a big lunch. Grady, who has autism, didn't ask his mommy for a banana in the conventional way by activating the anatomical mechanisms that produce human speech. Grady doesn't talk. He asked by using his Apple iPad.

"How about a banana?" Tara Oathout asked, offering a chunk to Grady.

He smiled, pushed the banana into his mouth and instantly returned to the electronic device that has, in ways both large and small, opened lines of communication that those who love him once feared were closed off for life.

"From the moment you know you're pregnant, you have a dream for your children. What they will experience. What they will accomplish. Autism takes a huge chunk out of that dream," Tara Oathout said. "For us, the iPad brings some of that dream back. It's as much for me as it is for him."

The profound transformation in the Oathout household, as Grady slowly began to reveal his thoughts and feelings through his iPad and its software, triggered a transformation in Tara Oathout herself. She is now dedicated to getting the same device in the hands of other families like her own - families who are struggling with the often overwhelming burdens, challenges, costs and mysteries that a child with autism brings into a home.

"I want other people to experience what we have experienced," Oathout said.

She has created an online support group called Loud Mommy (loudmommy.com, "A Loud Voice for a Silent World") and is planning a musical revue fundraiser at Peoria Players on April 1 and 2. If both shows sell out, she can buy five iPads for qualified families.

"That's just the start," Oathout said. "I'd like to grow this into something big."

It has been a tumultuous five years for Tara and her husband, Floyd Oathout. They were married in 2005, lived for a while in Princeville and now live in Sparland in the Octagon House, a unique eight-sided brick home built in 1886 that is now registered in the National Register of Historic places. In serious disrepair, they bought the house for $16,000 and are slowly working to fix it up.

"We were looking at apartments, trailers, trailer parks - anything we could afford," Tara said. "Then this showed up, and we were off on an adventure."

Grady was born nine weeks prematurely on Aug. 6, 2007, weighing 3 pounds, 14 ounces. When Tara first saw her son, the ignition turned on her newly developed mother's intuition and a thought she wouldn't share flickered in her mind:

Grady's not 100 percent OK.

Months passed and his development stalled. At 18 months, he was still not speaking and he was exhibiting several classic traits of autism: spinning, flapping his hands, staring for long periods at lights and ceiling fans. The couple had Grady assessed, and the word "autism" crept into the conversation. The day after his second birthday, Grady was diagnosed at Easter Seals with autism , a complex developmental disorder of varying severity that now affects on average one child out of every 110 births in the United States.

Tara, who turned 25 last week, immersed herself in treatments and therapies and in loving a child who would not love her back. Through her research, she learned that families were having success communicating with children with autism with an iPad, a hand-held computing device. Tara wanted one, but the cost, about $800 with the software she wanted, was prohibitive. The family was living paycheck-to-paycheck, yet Floyd was earning slightly more than the cut-off to qualify for an iPad from a national program that was subsidizing the cost for needy families.

Undeterred and relentlessly resourceful, she posted a picture of Grady and her story on a fundraising Web tool run by Facebook. She received enough money to buy an iPad in 48 hours.

"Money came from across the United States and around the world," she said. "It was incredible."

With the iPad in hand, Grady's vocabulary moved almost immediately from zero words to 10 with the use of software called iCommunicate. The program is an electronic version of a therapy regimen called Picture Exchange Communication System or PECS. It's a series of simple drawings; iCommunicate offers more than 10,000 different images that can help people who have trouble communicating locate and point to an image on the touch screen. The pictures illustrate a feeling, a need, or any of a wide range of other expressions.

Grady is already expert at navigating the touch screen, too expert in one area - they had to disable the YouTube app because he was fixated on looking at Mario of Super Mario Bros. video games. Somehow, the 3-year-old learned how to spell M-A-R-I-O to access videos.

"Before the iPad, he was nonverbal and showed little emotion," Oathout said. "Now I get hugs and kisses."

Tara was asked by the Peoria Center of Easter Seals, a place she knows well because Grady receives therapy there, to train other families on the use of the iPad as a communication tool.

"We have one iPad of our own in our autism resource room, and obviously Tara is very familiar with what it can do," said April Leopold, the director of developmental and autism services at Easter Seals in Peoria and Bloomington. "She connects with families because she lives it herself and getting iPads to people who need them has become her ministry. She's awesome."

Though no study has been completed on the value of the iPad as a communication tool for people with autism, anecdotal reports abound.

"Children with autism usually love electronics, so it makes sense that an iPad would be interesting and fun for them," Leopold said. "Moms can just flip it in a purse and have it available when they're in the waiting room at the doctor's office or anywhere they happen to be. There's not been research, but it seems like it's a valuable tool."

The Illinois Assistive Technology Project has iPads that it loans to families for about a month to see if it is something they would like to purchase. Currently, there is a 43-family waiting list, Leopold said.

"What Tara is trying to do is get them to people who otherwise couldn't afford them," she said.

Meanwhile, through all of this, Tara Oathout has been experiencing serious health issues of her own. In April 2008, she suffered the first of five strokes, and it took nearly a year to find a diagnosis of her own - a blood clotting disorder and an autoimmune disease called Mixed Connective Tissue Disorder. In that time, she also had hysterectomy surgery, meaning Grady will be the only natural child she will ever bear.

There have been signs along the way that Oathout interprets as proof that she is on the right path. She learned she was wanted to volunteer at Easter Seals on her 25th birthday, big news on a big day. The only weekend dates available for the musical revue fundraiser at Peoria Players was April 1 and 2, that happens to coincide with Autism Awareness month. The only weekend date available to use the Peoria riverfront for a 5K race fundraiser was Aug. 6, Grady's fourth birthday.

"I was always stressed over what I wanted to be when I grew up. I always wanted to know, and it just wasn't coming to me," said Oathout, who was home-schooled along with her sisters by their mother, Nanette Smite, Grady's adoring grandmother. "I went to beauty school, got married young and had a baby at a young age. But I didn't know my purpose."

Now she does.

"I want to be the mom of my autistic son," she said. "And I want to help other people."

Fundraiser will help families living with autism

When Tara Oathout was brainstorming ways to raise money to buy iPads for families living with autism who couldn't afford the valuable communication device, she came up with a classic idea:

"Let's put on a show!"

"Sing for the Silent: A Musical Revue" was born. Local talent will perform Broadway songs from shows such as "Wicked," "Les Miserables" and "Rent" at Peoria Players Theater on April 1 and 2.

The shows are sponsored by Oathout's Loud Mommy, a support group for mothers of autistic, apraxic or non-verbal children that provides encouragement through blogging, discussions, fellowship and education.

All proceeds from the show, besides a donation to Peoria Players for use of the theater, will go to purchase iPads. Oathout said if both shows sell out, they can buy five iPads fully loaded with communication applications for qualified families who apply on the website, loudmommy.com.

Tickets can be purchased online at loudmommy.com for $10.50 for adults and $5.50 for children 12 and younger. They can be purchased at the door for $10 for adults and $5.50 (the higher online price covers a service fee). Seating is general admission.

Doors open at 6:30 p.m., and the show begins at 7 p.m.

April is autism awareness month and April 2 is World Autism Awareness Day.

Writes Oathout: "Let's band together, enjoy a night of fun and entertainment while your ticket donation goes toward a cause that is so incredible. We may take for granted hearing our children's voice, but so many never get to hear their child say 'I love you' and an iPad is the only chance they will get."

Scott Hilyard can be reached at 686-3244 or at shilyard@pjstar.com.

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